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That Crazy Little Thing Called Lupus

Hello, everyone! My name is Erin, I was diagnosed with Lupus and Rheumatoid Arthritis in June of this year. Here's my story (Sorry, it's long):

A lot of my problems started out when I was really young. My mother believes it started after I got REALLY sick one winter around the time I was eight, and after that I just never seemed to get better. A majority of the time, I was sick. I started noticing problems with myself around the age of ten, when I started having breathing problems. I couldn't ever take really deep breaths, it would cause me a lot of pain. When we went to the doctor, he told me it was because I would sleep in place too long and the mucus in my lungs would settle, so it would hurt to break it up. I figured then that he was probably right, and just tried not to take deep breaths.

When I was thirteen, I started gaining a significant amount of weight. I went from 120lbs to nearly 200 in less than a year. My mother and I figured it was hormones, because I was hitting puberty, and when we went to the doctor, we didn't really receive any answers. My weight has always been a struggle for me since. When I was around fifteen, the fatigue started to set in. I could sleep from eight at night to seven the next morning and still fall asleep in class. So, again we went to the doctor, thinking I probably had Mono. That's when we found my old medical files and I was diagnosed with PCOS. It has been the doctor's fall-back ever since. When I started having the severe chest pains again, the doctor told me I had what they called costochondritis, the inflammation of the cartilage in my ribs.

So, as things progressed, I started to assume a lot of my problems were because I had been heavy most of my life. When I was 20, I started having problems with my knees, they would just ache and swell to the point where I could no longer take stairs (that was one of the most humiliating times of my life). Another heavy friend of mine who was my age was also having some knee problems, so I assumed again that it was because I was fat. Then my feet started causing me problems, and the pain would shoot through my foot and make it difficult to walk. I started working at Wal Mart as a stocker at 21, and figured that the physical part of the job would help. I lost nearly 100lbs, but my knee pain and foot pain would not let up. Again, I went to the doctor. They told me I had a vitamin D deficiency, and put me on a very high dose of D to see if it would help. It helped my feet a little. I also started having really bad dizzy spells, then. My vision would black out from time to time, freak me and my co-workers out, but I didn't think too much more about it.

Around September 2009, I started noticing problems with my elbows and hands. They would ache, swell, and I could barely move them some days. It would usually get a little better a few hours after waking up, but it was starting to affect my art, which for me was the turning point. My hands are precious to me, since I'm trying to get work as an animator, so them not working was not an option. I went to see another doctor, and after finding out that my dizzy spells were related to the fact that I had POTS (Postural Orthostatic Tachycardia Syndrome), and my blood pressure would plummit when I stood up, but otherwise he shrugged about my other problems. When winter hit, I started noticing that unlike everyone else, when my hands were cold, they would turn white. A friend of mine told me about Raynaud's phenomenon, so I looked it up. This was my first run-in with Lupus. I didn't see a doctor then, because I didn't want another dead-end.

It wasn't until Easter of this year that I even considered Lupus as perhaps being a part of my problems. My uncle's wife had recently lost her mother to complications of Lupus, and she said my symptoms were eerily similar to her mother's. After a black-out on the road, I finally decided to see a doctor back in my hometown. I had an ANA, Rheumatoid Factor, and many other tests done that day, and my ANA titre came back positive. So, I got my appointment with my Rheumy, and sure enough, on June 10, I was diagnosed.

It has since been a major struggle, from getting used to my medications, to getting medical leave from work, to just trying to adjust to a much slower life-style. I am excited to get to meet more people with this disease, and possibly make a few friends along the way!

Welcome to WHL, Erin! We are so glad you found us. Your story reads like so many of ours. Time and time again we hear the stories of doctors not listening or even ignoring symptoms because Lupus never crosses their mind. Since Lupus is our body attacking itself the doctors focus on each issue and fail to look at the whole picture. I am so glad you found a good and were able to get on meds to help with the flares and the disease progress!

Take a look around and we look forward to getting to know you!

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.

Hi Erin
Slim here glad you found an answer to all your issues even if it is lupus. The best thing to do is educate yourself on this disease and whenever you have
a new symptom or need an answer just post it here someone will answer you.Good luck and remember you are not alone.

Erin,
Welcome, it does feel comforting to know what you have, even if it is Lupus. I thought I was going crazy. When you do know you can educate yourself and pick up some hints and helps to help you survive! There are lot sticky's with information that you will find helpful here. There are others that will help you if you have questions that you can't find answers for. The best part is you will find people who have been and are where you are. We know and understand what you feel. So Welcome! We are glad you are here too! Billie

Like Tgal said - you're story is very familiar to most of us. You have found a great place where there are lots of people who can understand what you are going through and help lift you up when you are down. Welcome!

Sandy

As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.

You sound just like me, I have RA too and also "possible" Lupus as well. They threw Sjogrens in there as well because I have so many odd blood tests and symptoms, but the main 2 are RA and SLE. I have a high ANA titre, RF, anti ssa, rnp, sm, etc, etc...I just recently quit seeing the Rheumy I was going to because he stoppe listening to me so now it's time for the next one. I've been sick ever since I was little as well and they could never figure out why until now, which basically explains it all. I'm almost 24 now and it seems really unfair but all you can do is just move on and be the best you can be right?

Hi Erin; Welcome to our WHL family. As you can see, this place is filled with the kindest, most informative, and most understanding people on the web. As several have said, your story is so familiar to many of us. So you are amongst people who will always believe you, always support you and always understand you. Believe me, we know exactly what it means to be happy to have an answer, even if it is a chronic disease, because we then know that we are not losing our minds and that there is a name for what has been happening to us! It is a catch 22 in some ways...
I know you will find friends here and please know that there will always be someone here when you are in need!

Hi Erin, I also have so many of the same symptoms as you do. besides my CRPS, I also have reynauds, espicially bad in the winters. I have been diagnosed with chostochondritis many times too, and have problems with excess mucus in my lungs. As weird and strange as it sounds it is so gratifying to read these post about others that go through all the same things. Its like a big sigh of relief for me, as it tends to make you feel crazy with all the symptoms all over the place